ADA update and pump malfunctions (yes, that's plural)

First things first, I have been meaning to update everyone on what was happening regarding my concerns with the ADA, but just haven’t found the time.

Nicole got the ball rolling for me a few weeks back be emailing someone she knew. This person in turn forwarded that email to a very nice gentleman who works for the ADA. I’ll call him Mr. T.

Nicole very eloquently stated in her letter the concerns that we had regarding the ADA listing 3-4 times a day as a guideline to how often to check blood sugars. Mr. T. (who has Type1, by the way) at first had trouble believing that the ADA actually listed a number of times to test a day. Nicole and I both sent him links to the places on the ADA web site which showed this.

Mr. T contacted “his people” to see why. He was told that they were just general guidelines and that should not be taken as hard facts. That everyone should consult their health care provider to determine how often to test, etc. etc.

I told Mr. T that if they are just general guidelines, then they shouldn’t be up there at all. And, also made him aware that evidentially some people (and insurance companies) are taking those numbers to heart.

Long story short, Mr. T wrote a letter to Riley’s insurance company stating that the ADA does NOT recommend testing 3-4 times a day and that the actual amount of times to test should be determined by their health care provider.

My favorite part of Mr. T’s letter came in the last 2 paragraphs:

“It is especially important to note that the increased usage of insulin pumps and rapid-acting insulins (such as Novolog and Humalog) across the general insulin-dependent population –and thus more strict diabetes treatment regimens– necessitates the need for greater daily glucose tests in order to adequately monitor glucose levels to minimize the risk of hypoglycemic events.

As you know, one of the greatest short-term dangers for people with insulin-dependent diabetes is hypoglycemia. Not only can these events lead to catastrophic results for an individual, but they may also require hospitalization and medical attention which prove to be much more costly for the family, the insurer, and society as a whole. Indeed, the ADA hopes that insurance companies such as yours begin to take a long-term view of the benefits of increased glucose monitoring. Insurers should encourage people with diabetes to test more frequently rather than inhibit their ability to do so in a misguided attempt to save the short-term costs of glucose test strips.”

The last paragraph especially made me want to say “You go Mr. T!!!”

He is also checking with the people who put things on the website to see how to go about getting the wording changed.

So, I want to send a big thank you and a great big hug to Nicole for all of her help with this.

If we can get the wording changed on the web site, that will be great. But, what I really hope is that the letter he sent will make a difference in the long run about how many strips insurance companies will allow.

One more thought I’ve had with all of this: if testing often is not really that important then why is everyone pushing for the continuous monitors? I know that insurance doesn’t cover them right now, but I hope that they will at least partially cover them in the near future. The continuous monitors are considered great advancements to help achieve better blood sugar control. How then can people say I’m testing my son too often? It just boggles my mind.

Now, on with the rest of the story….

I’m lying in bed at 6:20 this morning. Michael had just gotten up to get ready for work and I asked him to check Riley’s sugar. We don’t usually check it at this time, but he had run higher during the night than usual and had to get a correction. I wanted to make sure he was not going too low.

I hear the machine beep. “He’s 212.”, I heard Michael say.

I sleepily respond with, “How in the world did that happen? Give him a correction.”

Michael replies, “It says give him .45 units.”

“Give him .30”, I say. ( He tends to drop the most at this time of day, so I’m being a little conservative.)

I hear Michael pushing buttons and then I hear, “Crap!”

“What’s wrong?”

“It says, ‘No delivery, call for service’”

I jump out the bed to reset the pump. I know what to do. This has happened before. I checked the history. It last happened in September.

I took out the battery and rebooted the pump. This involves rewinding, loading the cartridge, and priming.

All seems well. I gave him his bolus. ( A full bolus this time, because I’m not sure how long he’s gone without insulin.)

I didn’t call Animas right away. I laid in bed with Riley for about 15 minutes and then got up to got ready for work myself.

I called Animas a few hours later. I was told that the pump performs self-tests every minute and that it was just a safety feature. I told her it had last happened in September. She said it was just something that the pump did at random times.

I told her that my son’s sugar was high at a time of the day that it normally wasn’t and I was concerned that the pump was not working correctly prior to it alarming. (Sound familiar, Sandra?) She assured me that all was fine and that she would put the alarm in Riley’s record.

I hung up. From reading Sandra’s post before, I kind of knew what to expect. So, I just brushed it off.

Later, I was coming back from seeing a patient and was thinking: “ If this is just something that the pump does occasionally, why doesn’t it tell you that in any of the literature that comes with the pump?” Because, it’s not really supposed to alarm all that much, is what I’m thinking. I looked at Riley’s history earlier and noticed the same alarm had happened not only in September, but also in June and May.

As I’m thinking about this, my cell phone rang. It was my mom. “Riley’s sugar is 284. And, I went to give him a correction. I gave him .75 units and then the pump started alarming and says ‘No delivery. Call for service.’ Should I let him eat now or wait?" I told her to wait that I was only 10 minutes away.

I arrived at mom’s and performed the same steps I had earlier that morning. I looked back at the history and it said he had received .75 of .75 units, so I’m hoping he actually got the correction bolus.

I then got back on the phone with Animas. I’m thinking that surely they would send out a new pump. It had alarmed twice in 6 hours.

Not so, I was told. The pump must alarm 3 times in a 30 day period before they will send out a new pump.

I was trying very hard to be nice to this man. I know he was just doing his job and telling me what he had been trained to tell me.

I expressed my concern that the pump wasn’t working correctly. I told him I knew that blood sugars could vary greatly at different times of the day and that sugars changed on a day to day basis. But, I explained to him that my son’s sugar had been high at 2 times during the day when that is not usually the case and both times, the pump had alarmed "no delivery".

This is what he tells me. “ I guarantee your son’s pump is working correctly.” I’m assuming he told me this to make me feel better. It didn’t work.

I just told him that I “guaranteed” that the pump had alarmed twice in 6 hours and that that just wasn’t normal. I asked him how he could guarantee it was working correctly without actually examining it himself. He explained, just like the lady before, that the pump performs self-test every minute, blah, blah, blah.

I told him that I understood that, but that if it was performing self test and then alarming then something must be wrong.

Then, he explained that the type of alarm that we had means that the 2 processors were not receiving the same data. Well, that sounds like a problem to me.

I went around and around about this with him. I was just trying to explain that the reason the pump has alarms at all was to alert us to when something was wrong. And, the fact that it had alarmed twice in a 6-hour period was telling me that something was wrong.

I could not get him to admit that there is something wrong with the pump. I finally just told him that he needed to understand that I was uncomfortable keeping this pump because I didn’t think it was working correctly.

All I was told that if it happened again in 30 days, they would send out a new pump. I thanked him and hung up.

AGHHHHHH!!! I am so upset right now. We’ll see how it goes tonight. I don’t really want it to happen again, but then, in one way, I kind of do, just so I can get a pump with which I feel more comfortable.

I just keep reminding myself how lucky we are to have pumps and how lucky we are to have been able to get one for Riley.

And, how lucky we are to have Riley at all.